PWS and Holidays

Although this time of year can be a fun and exciting time, for those with Prader-Willi Syndrome it can also be even more stressful. Thankfully our Thanksgiving went relatively smooth this year. Last year our son, who was then 13, crawled out his window in the wee hours of the morning and ran away. The whole story of his elopement can be found here. I would be lying if I didn't say that memory has been in the back of my mind for most of the month. Especially after hearing about a 19 year old who had PWS, that ran away recently and was hit by a vehicle.

We were fortunate to have my inlaws here on Wednesday so that is when we had our Thanksgiving meal. As far as food goes, the way my family does Thanksgiving (and Christmas) is a lot different than how we did it growing up. I come from a big family so we would normally have 20-30 people for dinner and there was a huge variety of food. Food was in dishes over every surface of the kitchen and much of it stayed out for hours. You just cannot do it that way with PWS. We keep things very simple. We have about 4 different dishes and a couple of desserts. We can never leave food out as it leaves too much temptation and causes too much anxiety. Even on normal days we do not sit at the table with extra food. We dish up our plates in the kitchen and bring it to the table. (okay I admit sometimes we all go downstairs and watch Netflix while we eat ;)

The major issue we are having right now is even more questions than normal. (and he asks a lot of questions normally) Even more so he asks about the next meal, the next snack, the next time he will get a dessert. With the cooler weather we are getting less exercise so despite the fact our son is slim...we are watching it more than we do when we can walk a few miles a day. Hopefully we can get back swimming soon.

We took last week off from doing schoolwork but will be jumping right back in to it tomorrow. I'm thinking about getting A~man into an art curriculum that Z~girl enjoyed a lot last year. I just signed both kids up for a homeschool matchbox exchange. (I've never heard of it before this week) Each month has a theme and you take a match box and decorate it and fill it with things having to do with the theme. This month the theme is "Famous Artist" so we are going to have all sorts of fun with THAT! I am always on the look out for activities to help out our right brain visual learner and throw some kinesthetic learning in there too! I will definitely be sharing the project in my blog so stay tuned.

Our weekend trip

I'm not sure if I mentioned the story about this young man in my blog but it is so very close to my heart. You see L.J. who was 15 this last fall, also had Prader-willi syndrome. As I understand it he had eloped off and on for many years, but in October he was hit by a vehicle after getting ice cream from a convenience store in the middle of the night. In this families case he was in a group home that was supposed to keep him safe but the drive to find food was so strong and they (the group home) were not prepared for the level of safety that someone with PWS needs.

The last couple of months we have been dealing with the "system" in our own home to ensure we can keep our own son safe. We have had an alarm in our hallway since last year and now have an alarm on his window. We do not feel this is enough. My husband will be installing a type of lock that will deactivate when/if the smoke detectors ever go off. This isn't something we have decided lightly. We have been through our local mental health service provider and the local fire marshall. We have even been in contact with a local senator as we felt our concerns were not being taken seriously. We let many professionals know about L.J.'s story and finally we have some support to make sure we keep our son as safe as possible.

On Saturday we went to a 5K that L.J.'s family was doing as they are setting up a foundation to build a group home for individuals with PWS in the state of NC. Most group homes are not equipped to take care of people with PWS with monitoring for food control and the other measures needed to keep them safe. It was a very nice event for a wonderful cause. We were able to meet his sweet family and also two other families that have children with PWS. (I'll post a group shot with the three kiddos after I get permission from one of the other families) It's really amazing to get together with other PWS parents that totally "get it". You do not have to explain your choices for what you feed or don't feed your child and have to deal with "that look" that some give you, that you are over protective. They understand that you do what you have to do to meet the needs of your child. Here is one picture though I took that is the backs of A~man walking with a young man with PWS that is about 5 years older than my son. It made this silly mama teary.

We really enjoyed our little weekend trip and hopefully it will be the beginning of some roadschooling trips for this spring/summer. I am devising a plan to make some extra money for some fun educational trips. I REALLY want to go to SD this summer as the kids have only been there during the cold months. There are so many fun sights between here and there and I want to explore. So...I ordered a postal scale off of Amazon and I'm hoping to start selling on Ebay again. Years ago we were really big into selling there and I'm hoping to make some traveling money.

Here is the link to L.J.'s Foundation page if you would like to read more about it.